blood test shows kidneys slowing down?

Hi everyone,

I posted here a bit when I was first diagnosed but I've been in remission now for a long time, probably since a month after my colonoscopy. I've been going to the GI every 4 months, mostly just to get my prescription refilled. I take 500MG of sulfazalazine 4 times a day as well as folic acid and multi-vitamin supplements. I'm slightly anemic but I can keep it under control with Forvia.

Anyway, once a year the GI tests my blood just to make sure my iron levels are okay. I got my blood taken today. The iron levels are fine but my kidneys are slowing down and he's concerned. And of course, now I'm freaking out.

He wants me to stop all my medicine for the next few days and then come back and recheck my blood on Thursday. I haven't gone without UC meds since before I wad diagnosed. In the mornings when I wake up, my stomach is all weird until I take them and then it calms down so I'm really worried about what this will do to me this week.

And of course, there's the kidney issue. He thinks it might be related to the sufla, which is why I need to stop taking it. Or it could be caused by some Nyquill I took a few days ago two nights in a row because of a cold I had. The weird thing was, (and I'm sorry to be TMI but I wanted to give you all the information in case any of you had prior experiences or advice) I noticed over the weekend that I was going to the bathroom for urination much less. I even mentioned it to my husband because it was strange. Later that day, I developed a yeast infection so I chalked it up to that. I googled and it seemed Cough Medicine can sometimes cause yeast infections so I treated that and moved on thinking I'd solved the issue. Until today obviously.

So I'm wondering if this has happened to anyone else with the kidneys slowing? If so, did it get worse? I have a vivid imagination and the things running through my head--kidney donations and the whole nine yards--are not exactly comforting. Neither is the prospect of switching to Asacol, which my doctor mentioned would probably be the likely result of this experiment, if the kidney function improves or doesn't improve. Asacol is expensive and I'm kind of unemployed right now. I do have insurance through my husband so hopefully that will help. I just know what my grandmother pays per month on it and I can't possibly afford that.

And has anyone stopped their pills cold turkey for several days? How did that go? Am i in for a very difficult week? Thankfully I can rest at home this week but I do have a temp job that starts next week.

I've already stopped the medication, so I'm not ignoring my doctor's request or anything. I didn't mean to imply that.

I'm just nervous and wondered if anyone else experienced something similar and how it went.

Hmm...that is strange. 6 months versus 2 days is quite a difference. My doctor said he wanted results before the weekend so we could figure out a plan of action right away. Uh oh. Now I'm thinking bad things, like if it doesn't get better immediately, he'll hospitalize me?

How have you been doing off the Lialda? Have you had bad flares?

Please keep me updated on your retest. And good luck! I hope it's improved for you!

Try not to worry so much about the now. Your doctor is monitoring you; so he should have caught it early. Like I said it's a warning.

@zippy123 I've been taking the sulfa for 2 and 1/2 years.

@aguywithuc: I don't know what the basis of his conclusion was, but he compared my blood test results from yesterday with ones from last year and there was a significant change. I'm getting another test on Thursday.

So far I'm doing pretty good without being on meds. I feel sort of like a walking time bomb but I'm not sure if that's just mental or not. I've only gone to the bathroom once, in the morning, like usual. My stomach has been sort of swirly all day, not as calm as normal, but I'm also paying too much attention to it, which I haven't done in years! I'm trying to eat only foods that won't trigger it, like baked chicken and cooked veggies. And I'm drinking tons of water.

I hope your new results come back good! Please do keep me updated.

I went for my second test today and the good news is my results came back completely normal. Yay! Since we're not sure if it was the sulfazalasine or the nyquil that messed up my kidneys so we're doing one more test. I'm going back on the sulfa for a week and taking another blood test next week. If that comes back good, then it was the nyquill and I should be fine (and I will never take nyquil again!). If it comes back bad, then we know it's the sulfa and I will have to go on asacol or something else.

So I'm happy that my kidneys are good but not happy about more blood tests. I have horrible experiences getting blood tests because they can never find my veins. I thought Monday was bad when they kept tying and retying the rubber band but today was worse. They tried on my opposite hand for a long time, finally got the needle into a vein, and then sat there for 15 minutes with the blood running way too slow. So then they had to stop and start the whole process on my other arm! Ugh. Both my arms are totally black and blue. But, I will suck it up and go again and hopefully next time I won't cry like I did today! haha.

I've been off the sulfa for 3 days now and I have to say...I feel great. I haven't had any problems. It's been delightful not to live my life around an eating schedule for the pills. And I've eaten so much less the last few days because I didn't have to eat when I wasn't hungry so something would be in my stomach to dissolve the pills. (I have to do that 6 times a day for my sulfa and then my multi-vitamins since they can't be taken with the sulfa.) But I know I need to be on a maintenance does so...oh well. Bye bye freedom.

I also went on a gluten-free diet the last few days after reading stuff here and other places about how it would be better for people with UC since the gluten foods are hard to digest. I'm not ready to be devoted enough for something like SCD. I wonder if I'm feeling so great and having so little problems because of the diet. I'm going to experiment a bit more and see how it goes. I LOVE bread and pasta and dessert so this is a huge commitment for me.

I don't understand why you would take the chance and go back on sulfazalasine. The kidneys are way important.

KaseyF said...
@subdued I went back on the sulfa because my doctor told me to.

That's not a very good reason. Our health is our responsibility. A doctor can merely advise us. He/she does not have all the answers.

Post Edited (subdued) : 10/23/2010 9:22:12 PM (GMT-6)

KaseyF said...
My health may be my responsibility but my doctor knows way more than me in this area.

Then you need to do more research. UC is a disease that is little understand. Doctors don't even know why most of their patients get this disease. All they can do is prescribe medicine to prevent the inevitable for many, which is getting the colon surgically removed. Many of the medicines they prescribe are damaging to the health. But they don't know what else to do.

Take your doctor. Practically all medicines for treating UC are hard on the liver and kidneys. He's probably thinking that your colon is not damaged enough to recommend surgery. So he'll continue to prescribe medicine and monitor you. Perhaps he'll switch medications when your lab results don't look so great. He probably knows little if anything about alternative treatments. So he can't advise you on those.

It's so easy to say, "I'm being monitored; so it's okay." Do you think all those who got liver failure, pancreatitis, and kidney failure from sulfasalazine were not being monitored?

I have two conditions: acne and IBD. Believe me, I know way more than my doctors do in terms of my conditions, after all my doctors are not living in my body. They are not experiencing what I'm experience. And they don't have the time to put into learning about every disease that they treat in minute detail.

Become informed, and then you won't need to be scared. Don't say, "I'm sacred; so I'm not going to become informed."